It’s been a hard week, or rather; it has been a very emotional week. Today Josie was unable to sit still long enough for her echocardiogram. We had scheduled the test at my local hospital rather than the large children’s hospital in Pittsburgh. I thought this made sense from a convenience standpoint- less time off work (actually, no time off, because I was just able to run upstairs at lunch) and ease of scheduling. Because I am an enormous dope I did not anticipate either her failure to cooperate or the fact that I would run into every patient I have ever had. I am a family doctor in a very small town, full of very nice people, and if you think that a horde of very nice people are going to let their doctor’s daughter be whisked by with no introductions you are very sadly mistaken. Let’s face it, I was wearing my badge and on their turf, so I cannot blame them for asking me to put my doctor hat on, and do my best to remember names and medical history and let them admire Josie. They didn’t know I was actually wearing my mom hat, and wanting to cry over the fact that we were now going to be forced to have a sedated procedure, more drama, more waiting. It was a very stressful five minutes, and it felt like five years.
After Tim had brought Josie home we talked about everything on the phone and both basically came to the same conclusion. Enough. Stop. No more shot in the dark tests, no more specialists. We looked at the two camps that have formed- one of our pediatrician and physical therapist, which feel Josie will be OK with time and effort, and the doom and gloom geneticist. We decided to throw in on the optimistic side and focus on therapy. Josie has been poked and prodded and tested and it hasn’t given us any answers. So, no MRI, no echo, no skeletal survey, no more anything unless a doctor can tell me that it will change the outcome of what we are already doing.
The part we didn’t talk about was what this decision meant for having future children, but in my heart I said enough to that too. If sparing Josie the barrage of testing means no more children, then I should be grateful for the healthy and joyful child I do have.
And then tonight, Josie took five steps all on her own. Just like that. And she did it again, and again and again. She has to start from a standing position, and she can’t stand independently, but she can walk. I’m sure we still have months of therapy, and braces and hard work ahead of us, but she can walk. She will walk, and those few seconds when she just let go were like the first time I saw her face. It was that good.
